Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help!

pugluver31902

By pugluver31902
in Coping with Celiac Disease

Recommended Posts

pugluver31902 Explorer
pugluver31902
Posted

Hi, I was just diagnosed with celiac's disease, and Im feeling very overwhelmed. Im having a hard time believing its even true. I had foot surgery, and my post op bloodwork was coming back abnormal, so the doctor ran a big panel of tests and the celiac test came back positive. Then I had a biopsy and the diagnosis was confirmed. I have never had any gastrointestinal trouble, so Im having a hard time believing this is really happening. I have started the gluten free diet, met with the dietician, and had a bone scan which revealed osteopenia. Im feeling really overwhelmed. Im reading these pamphlets that are talking about how Im at a huge risk for cancer, and other auto immune disorders and stuff. My biggest fear is that I wont know when I have accidently eated gluten, since Im asymptomatic. I guess I dont even know what my question is. Just seeing if anyone else can relate.... :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

Even though I had been suspecting my daughter of having celiac for 7 years before she was dx'ed gluten intolerant by Enterolab, it was still a shock. And then I was shocked again to find out I had it, too.

You may notice that you feel better in general after you stop eating gluten. And you may start having symptoms when you do have gluten once you have eliminated most of it.

Once I started the diet, I felt a difference within 3 days. Many things that I just thought were normal went away. I thought I had ADD, I was always tired, and I had brain fog. Now I can tell when I have had some gluten because that all comes back. I also get a slight stomach ache right after I eat it. I never knowingly have gluten but I have been cross contaminated before.

celiacgirls Apprentice
celiacgirls
Posted

Also, if you follow the gluten free diet, your risk of cancer returns to normal and I think your risk of developing other auto-immune diseases decreases also.

Guest celiacsher
Guest celiacsher
Posted

Hey and welcome. Yes it is overwhelming and can be scary. As for the cancer, it can increase your risk but following the gluten-free diet will help alot. I am asymtomatic as well but can get upset tummy if glutened. It will happen from time to time just be very careful and read ALL labels. It will get easier and things will become just the norm. You are fortunate that you were diagnosed before you became very ill like I did. It has been 1 yr and 5 ms for me and I am feeling better slowly. Just remember it is a lifestyle change and will get easier I promise. If you have any other issues please email me I will be glad to help.

I hope this will become easier for you as time goes by.

Sherri

pugluver31902 Explorer
pugluver31902
Posted
  • Author

Thanks so much for your responses. I have been on the diet for about five weeks now. I really don't feel any different than I did before. Maybe in time I will notice something.

Guest cassidy
Guest cassidy
Posted

That must be tough not to have any symptoms. I certainly feel bad for myself when I get glutened and feel crappy, but I think it would also be tough to be trying your hardest and not really know if you are doing everything right.

Just to try to put your mind at ease - most people get the hang of the diet fairly easily and if they are careful don't get themselves sick very often. So, even though you can't tell, you are probably going to do just fine on the diet. It does get easier. I really don't think of it at all when I'm at home because I have a good list of foods that I am used to eating.

Secondly, I have never really heard of anyone talking about cancer on this board. Yes, I realize it is a risk, but my mom was diagnosed in her 50s and me in my late 20s and lucky for us, that has never been an issue. People here do talk about all other sorts of complications that have gotten from celiac, but most resolve on the diet. So, yes, cancer is a concern, and may scare some people into staying on the diet, but based on what I have seen it isn't like tons of people are being diagnosed with it all the time. I stick to the diet and don't ever think about that anymore.

Good luck, you will find some great information here. Glad you figured things out before you got sick so you didn't have to suffer with unexplained symptoms for a long time.

tarnalberry Community Regular
tarnalberry
Posted

You are not alone in feeling asymptomatic. Be glad it was caught this early, so that you are. (I know, it's a mixed blessing...)

It's hard to get adjusting. Depending on how fast you naturally adjust to major change, you may find that you've only got another month to go, or another six months, until you feel comfortable having broken all the old habits (of eating wheat filled stuff) and replacing them with new habits (of having gluten free stuff around).

There's lots of different helpful advice around here, so keep on reading and asking questions!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pugluver31902 Explorer
pugluver31902
Posted
  • Author

Thanks guys. I feel better knowing that everyone felt a little overwhelmed at first. Its just so hard! I was diagnosed right before Thanksgiving, and now with all the Christmas parties. Arrggh! But I am thankful that it was caught early. No complaints there. And I am thankful that I live in an area with a lot of gluten free stores. But it still sucks..... Lol

zansu Rookie
zansu
Posted

I think some sites talk about the increase in cancer and auto-immune diseases to either make celiac seem more important to the ignorant who think it's just like a minimal lactose intolerance (Oh, so you get a little gas, who cares!) or to make newbies take the gluten-free diet seriously or to help health care professionals and us to bear in mind that the percentage of, say lupus, in the general population is a small number, but in symptomatic celiacs not on a gluten-free diet (or not yet healed) that percentage is higher (After all, diagnosis is a percentage and numbers game). so, IF you don't follow the diet, think about those other things. If you go gluten-free, think about more important matters.

pugluver31902 Explorer
pugluver31902
Posted
  • Author

That makes me feel better, thanks!

happygirl Collaborator
happygirl
Posted

pug,

we are happy you are here and learned about Celiac Disease. i am sure you must be overwhelmed-especially without the symptoms. although it is tough, i am so happy you learned.

once you go gluten free and stay on a strict gluten free diet, your risk of many cancers and other problems decreases. Its often the undiagnosed that have higher rates of problems. however, there still is an increased risk for some. but the risk is still small!!! it is hard to grasp it all, but on the other hand, its a blessing to know we have the control to help ourselves!

feel free to ask any questions. let us know what we can do to help!!!

Laura

pugluver31902 Explorer
pugluver31902
Posted
  • Author

Well here is a strange new turn of events. When I got my diagnosis, I was telling my mother-in-law about it, and she goes "Oh! I had celiac's when I was little, but I outgrew it. You will be fine in a few months." Now if you knew my mother in law, you would certanly NOT think she was fine. She is at a doc appt four days a week for one of her many ailments, and she NEVER thought it had anything to do with the celiacs! So then, her whole family starts thinking maybe they have it too. I have a sister in law who has the worst circulation and many other health problems. I have a niece and nephew (her kids) who also have problems. One is 8 and the size of a three year old. They thought he had a growth hormone problem. And my neice, also has a lot of medical problems. My husband has always had dental enamel problems. So once I start telling them about celiac's they decide to go get tested. My husband, sister-in-law, and niece and nephew all tested positive. All their problems were because they were so malnourished! So I thougth that was quite a coincidence. But my mother-in-law is still insisting that everyone will "grow out of it." So now that my husbands whole family has it, and I have it, and who knows how many people on my side of the family have it, we figure that when we have kids, they are doomed. Lol

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.